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In their article, de Groot et al respond to a call to bring investigative genetic genealogy (IGG)i to the bioethical debate.1 They explore the extent to which the ethical approach used in the medical clinical genetics context can be helpful for conceptualising the ethical issues associated with IGG. They conclude that such an individual-based model, which revolves around notions of consent and privacy, has significant limitations in the IGG context. The authors call for a broader balancing of the benefits and risks of IGG, and the need for collective democratic engagement.
de Groot et al’s paper is a welcome addition to the literature—not only because it is an interesting and important analysis in its own right, but also because it foregrounds the importance of bringing forensic genetic debate to the bioethical audience. While forensic genetics (and genomics) has become increasingly widespread in the criminal justice system, bioethicists have often shied away from engaging with the ethical issues these practices raise.ii Perhaps this relates to the narrowing of bioethics debate over the past half a century to focus primarily on health-related issues,iii or to the techno-legal normative separation of DNA analysis in these two sectors, or perhaps both. Either way, as our desire for an ever-increasing collection and analysis of genetic data continues—and as we have seen in the IGG context—the lines between health, forensics and recreational associated DNA analysis and use are set to become increasingly blurred.
While I thoroughly enjoyed reading de Groot et al’s paper, I would like to take the authors’ choice of using the medical clinical genetics encounter as an analogy to highlight the limits of an individual-based consent/privacy model in the IGG context further. Over the past few decades, rapid technological development, and the accompanying ambitions to pool and use research and health data for societal benefit has meant that bioethics discussion has shifted from a primary focus on individual notions of autonomy and respect, to include the consideration of wider ethical principles. These principles, such as, for example, notions of trustworthiness, accountability, reciprocity, solidarity and openness, could provide a good starting point for addressing some of the limitations of consent that the authors talk about, and could help provide the moral language to have a debate about IGG. I provide two examples below.
First, the bioethical principle of solidarity places strong ethical emphasis on people’s willingness to engage in activities that may carry some risks for the benefit of others with whom they share some similarities.2 Applying this to IGG, if we assume both recreational DNA database users and the wider public share a desire for a good life for ourselves and family—and that we want serious criminal investigations to be effective, and to not cause unnecessary harm to any individuals in the process—then solidarity requires us all to accept this risk of harm because of the benefits that may come from it. Such a solidarity approach, as de Groot et al hint at—and I have separately called for—would require democratic deliberation and consensus, and, of course, cannot address all the issues the authors raised as associated with IGG, but could at least be added to a moral language dictionary, beyond consent, that can help us discuss the ethical aspects of the technology.
Second, rather than throwing privacy out with the bath water, this concept is better conceptualised as both individualistic, through notions of individual privacy rights and data governance and collective. Collective privacy permits consideration of social-political issues that relate to, for example, data surveillance and data politics, capitalism, trust/trustworthiness, social/collective value and social hierarchy and power (eg, see ref3 ., In fact, my own interviews showed how IGG stakeholders framed the extent of support for the technology around notions of trust, in terms of how the criminal justice system was perceived to operate more broadly (power, social hierarchy, etc). Considerations of collective privacy become even more crucial as—as the authors raise—IGG spurs increasing support for a universal database. Here, the concept helps us interrogate emerging power relations and data surveillance, both in terms of the storage of DNA-associated information (who will/should hold this information? How will it/should it be accessed?), but also in terms of data-associated practices within the criminal justice system. It is well established, for example, that greater trust is placed in the scientific accuracy of forensic DNA technologies than other types of information and evidence in forensics and criminal investigation (‘CSI effect’,4 and that the image of forensic DNA evidence is often as a ‘truth machine’).5 It is also well established that the political system has experienced a process of securitisation in recent decades, so that more and more social problems are reframed as problems of security.6 A collective privacy perspective asks how a universal database (or in fact, IGG) furthers or diminishes these socio-political factors (both good and bad). It also looks at other aspects, such as the different ways in which surveillance and power—which emerge from a ‘securitised society’ that places faith in DNA as a ‘truth machine’—play out when considering social hierarchies, power and those already marginalised in society. Such a perspective also aligns with other ethical perspectives, including those related to the many tenants of justice.
Concluding, I applaud de Groot et al’s contribution to the bioethical debate. I have tried to further it by suggesting that a collective approach to IGG would have been a good place to start. Collective approaches have long been drawn on in the forensics arena, where a focus on notions of proportionality, social value and social harm are prominent. I have tried to explore what bioethical principles could be useful for such a collective approach.
Ethics statements
Patient consent for publication
Acknowledgments
Thank you to Debbie Kennett for reading a first draft of this comentary.
Footnotes
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
↵IGG involves genealogists working on behalf of law enforcement searching specific recreational DNA databases with unknown origin DNA from either unidentified human remains (suicides, missing persons, war cases) or from a serious crime scene in an attempt to identify the victim or a suspected perpetrator. Searching is long-range with the potential to find second, third or more distant cousins. The genealogist puts the matches into clusters based on shared matches and builds out family trees to identify the most recent common ancestors and then traces the trees down to the present in an attempt to identify the victim or suspect of interest. As de Groot et al explain, since the 2018 high-profile arrest of the Golden State Killer in the USA, IGG has been increasingly used in a number of jurisdictions.
↵At the same time, there has been increasing attention from social scientists in this space.
↵This is now changing, with bioethics expanding into the public health arena, as well as the planetary health arena. For example, by considering how biobanks contribute to environmental and social harms (see: Samuel, Lucivero & Lucassen. 2021. ‘Sustainable biobanks: a case study for a green global bioethics’ Global Bioethics).
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